Thursday 22nd March

Dad has no pain at all. Long may that continue. He is, however, failing pretty fast and is very weak and tired. He cannot stand at all or even move his legs in the bed. I would rather that than him be in pain, though - as we can cope with mobility.

I know they can deal with pain, too (with drugs) but at least so far he is fully aware and not doped up. He doesn't even take paracetomol.

I am waiting to go shopping but we have to see the District Nurse first when he comes, as there are a few problems we need to discuss (about dad).

By the way, my sister is doing as much, if not more, than me. She's got herself signed off sick for a few weeks and I think we make a pretty good team! I am not here on my own. And of course, mum is here, but I don't like her to see too much when we're caring for dad as it is quite shocking and upsetting. I've kind of hardened myself to it but when mum is in the room she gets very upset to see dad the way he is.

Comment added in May:
We'd wanted to see the District Nurse because it was very clear that Dad was bleeding - his stoma bag and catheter bag had blood in them. Signs that they'd told us to watch out for when they told us the INR was alarmingly high (over 10). I'd reported it to the on call doctor the night before but she'd said to wait and see the District Nurse.

Before the District Nurse arrived this day, dad's GP (Dr Kay Rathbone) turned up. She'd seen his INR results and wanted to check on him. She looked at Dad and took his BP. 90/60 - too low. She checked the blood in his catheter and stoma bag and said that Dad would have to go to hospital. He didn't resist, but he did comment to Lorraine that he wished they'd just leave him to bleed to death.

An ambulance came quite quickly and I volunteered to go in that, while Lorraine took the car and Dad's things. We told mum she should stay at home.... she did argue a bit but we persuaded her that sitting around all day wasn't going to do her any good.

Well after getting car sick in the back of the ambulance (how disappointing as I'd always wanted to go in an ambulance) we were taken into the Emergency Admissions Unit at around 2pm and there the process of waiting began. Dad was looking really poorly and getting more uncomfortable with every minute that passed (his bed sores were really giving him pain). Eventually we saw a young Doctor who took some blood and had a chat with Dad. He then had to get the results organised and get his treatment plan signed off by somebody more senior. This took until after 6pm, by which time Dad was actually complaining (something he rarely does in hospital) and absolutely desperate to be moved and made more comfortable. He kept saying "tell them I need a 4" pressure pad to sit on". Then they decided to take Dad for a chest x-ray before he could go onto the ward. The nurse sent Lorraine and I for a coffee and told us to meet them on A4 at 7.30pm.

No sign of Dad when we got there, we finally managed to find out that he was on A6 (they changed his ward number three times!). A6 was about 20 yards down the corridor from A5, where Dad spent almost 6 weeks. The nursing staff on A5 were wonderful. Quite a different story on A6.

The ward itself was dirty looking (in fact, I cleaned the floor by Dad's bed as there was food and spilled coffee on it). The place just had a very different vibe to it from A5. It was visiting time when we got up to Dad's bed - he was pretty zonked out and finally looked comfy.

We were surprised to see Kevin (who'd been in A5 when Dad was there) in the ward. And also, Roy, another "neighbour" of Dads was still in A5. We'd seen Lucy (A5 Staff Nurse) as we passed through and she said she'd spoken to Dad as he went through there.

So, we went to Dad and started trying to find somebody to talk to about the treatment plan. I was also concerned because we had all Dad's meds with us and wanted to explain where he was up to with them. The first nurse we spoke to didn't seem interested as she was going off duty at 8 - "tell the night staff" was her advice. Then a little skanky looking thing with attitude came marching in and hooked a bag of gelofusion onto dad. When I asked what it was for and how long it would take to go through, she was really dismissive and said "I've no idea, I don't know the patient, I'm only doing this as a favour". And stomped off. By this time I was getting quite irritated and so went out to the Nurse's station where I found a Sister. I asked if the night staff were on yet and she said yes. "Oh, cos I'm waiting to see Dad's nurse" I explained. She suggested that I speak to Sarah (his day shift nurse). "I've already tried that, and she told me to see the night staff". Grudgingly, the sister came over and got Dad's file out. She gave us a rough idea of what the plan was, and said a doctor would be round.

Dad, in the meantime, started vomiting. He filled bowl after bowl of liquid full of black stuff. I was terrified - what the hell is this? I immediately thought "lung cancer". When we finally got a nurse to look at it, she said it was "just old blood" from his stomach. God knows how long he'd been bleeding for. Then they just left Lorraine to deal with Dad while he was being sick.

We stayed with Dad and he settled a bit, but started to wander a bit and talk about seemingly random things. At one point, the guy in the next bed had opened his bowels (bear in mind we're on a colo-rectal ward!) and it smelled a bit (actually it smelled a LOT!). Dad started asking if they'd had lamb curry for tea! Then he said "Oh, you can buy it ready made, or you can make it your own way". Soon after, he started to tell us a tale about having to deliver some glass (we thought he'd said glasses) and having to be there on time, at 6am, in London. He told us he did it, he got there on time. We later found out that this was an actual job he'd done when he worked for Holt Lane Transport. We couldn't figure out what he was talking about at the time.

Soon after, Dad seemed to pick up a bit and the nurse checked his BP - it had come back up a bit. Then the doctor arrived and put the fear of god into us. She was only a young girl, and she started asking Dad what he wanted them to do if he took a turn for the worse during the night. Dad was still a bit out of it, and I said to her that he didn't really understand what she was asking him... she gave up and came round to see me. She asked if we'd discussed as a family what our wishes were in the event of his heart stopping. I was shocked. I asked her if she thought that this was likely. She said it was possible. Crikey - we hadn't quite realised what we were dealing with. She then said she'd come back with her senior surgeon.

After a while they came back - by this time Dad was a lot brighter and more "with it". So, the surgeon explained to Dad that there was a chance he could take a bad turn in the night. He explained that he thought this unlikely and that they seemed to have things under control, but what did Dad want them to do? Did he want the crash team involved? Dad just looked at him and said "D. N. R.". The junior doctor looked at me. "He's telling you Do Not Recussitate" I said.

By this time it was getting late and they were settling people down in the ward. Dad had stabilised and his BP was going back up every time they took it. Lorraine asked him if he wanted us to stay. He didn't. So we left at around midnight and headed home.

Next day, all was well, but Dad had to stay in another night until his INR was back at normal levels. This took just another day and they let Dad home on the Saturday. Which was lucky because his hospital bed and hoist had arrived on Friday night.

It was a strange experience to be wishing that Dad would pull through this. I knew he was terminally ill, but it just didn't seem like it was the right time for him to go.